Undiagnosed Vascular/Neurologic condition causing positional headache

For the past 10 years I have suffered from an undiagnosed condition that causes facial swelling as well as headaches which influence my hearing and vision at the worst. I have been unable to lay flat as the feeling of pressure and headache in my head, face and sometimes upper body is too much. I will be able to see puffiness on my upper lip and bags under my eyes when feeling of pressure is high. Upon waking in the morning and walking around, I can physically feel liquid draining out of my face. My sinuses will make a popping noise. Certain positions during the day can make the pressure and headaches return. Diagnosed with May-Thurner, MALS and Nutcracker but my vascular surgeon can't explain the positional headaches or swelling with this diagnosis. I had a recent lumbar puncture with CSF removal which gave me some shortterm relief regarding the headaches. Opening pressure was only 21. Recent Brain MRI showed Empty Sella and mild CSF distention of the right optic nerve sheath.
I have bad positional headaches and constantly have to reposition my body in an attempt to not get pressure build up.
I'm hoping the Mayo Clinic @ Rochester will be able to help.
Anyone at all who can relate? Maybe even somewhat?
I have had an extensive medical workup recently and 10 years ago as well and I'm an otherwhise healthy and active 37 yo female.